Why the Ice Bucket Challenge Isn't Over

Former Boston College baseball player Pete Frates is no longer able to write or speak because of the advanced condition of his ALS. Pete’s parents, John and Nancy, have written this on his behalf.

One in 50 high school athletes goes on to play at the Division I level in college. One out of every 50,000 people gets amyotrophic lateral sclerosis (ALS). Our son, Peter Frates, is a part of both of those groups, and both worlds have shaped the legacy that he will leave behind.

Many people know about our son as an advocate: he was one of the driving forces behind the wildly successful ALS Ice Bucket Challenge, which has raised over $220 million for a previously little-known condition.

Others may know our son as an athlete: Pete played center field for the Boston College Eagles and was named captain in 2007. That year’s high point for Pete was his game at Maryland, where he went 4-for-6 with a grand slam, a three-run homer, and an RBI double. His eight RBI set a new team record.

The Pete we know is our wonderful son. His love of sports started as soon as he could pick up a ball and waddle around. It didn’t matter if it was baseball, football, or even ice skating, Pete couldn’t get enough of sports as a kid. When he was in fourth grade, his gym teacher came up to us and said, “I’ve been watching Pete since he was in Kindergarten and I’ve waited for this particular curriculum because this is dance. It’s the one I wait for after I’ve had my eye on a kid because it’s the best way for me to see raw talent. He passed my test with flying colors. You have yourself a Division I athlete here.” Pete was nine.

Pete grew up as a fan of any great lefty of the ’80s and ’90s. He lined the walls of his room with pictures of Barry Bonds, Ken Griffey Jr., Will Clark, Ray Bourque, Steve Young, and Doug Flutie. He styled his play after theirs. His appetite for any kind of athletics was insatiable. We would take our daughter, Jennifer, to ice skating lessons and she hated it. Pete would go onto the ice and literally not come off. The Zamboni would be out there almost ready to run him over.

Along with baseball, Pete played Pop Warner football and youth hockey. He started playing both of those when he was six. Since he was a “Mighty Mite,” he got the worst ice time — a 5:30 a.m. practice time. He would hop out of bed at 4:30 to pick up the hockey bag and throw it in the back of our Tahoe to head to the ice rink. We had to be right behind him with another bag of football equipment because after hockey practice, he’d go for his Sunday morning football games.

As we were driving — and we don’t advise this to any parents — he would be in the back taking off all of the hockey equipment and putting on all the football gear with a big smile on his face. While he was having fun in his youth leagues, his leadership skills and discipline were taking shape. As he grew into a young man, those qualities were strong elements of his personality.

Pete didn’t hesitate to call out his teammates for trying to take shortcuts in workouts. He would hold them accountable for any infraction or improper behavior. When Tony Sanchez (now of the Pittsburgh Pirates) was a freshman at BC in 2007, he mailed it in during a round of lifting. Pete laid into him. Tony could have taken it badly, but he said, “This guy held a mirror up to me. He made me never short-shift a workout ever again.” Now Tony’s playing pro ball. Pete instilled that work ethic and value system in his teammates. We never knew that story until we met with Tony at a Pirates game just last year.

Pete continued playing baseball after graduation by going to Hamburg, Germany to play in the German Baseball League. After spending some time out there, Pete returned home and joined Intercity League Baseball in Boston. The league was pretty high quality and full of former minor league and college players. Pete was thrilled with the opportunity to play at that level.

Despite his relentlessness and determination, Pete began to see a dip in his athletic ability during his 2011 season. The only thing that was a tell — and he’s now since admitted — was that his bat speed really slowed. He won the MVP of the league in 2010. He hit .375. But just a season later, he was struggling — he hit .250 and even though he still had power, his home runs weren’t those majestic moon shots he used to have. They were line drives. He had to square ‘em up perfectly to hit them out. We had never seen him hit home runs like that. His timing was just slightly off. We know that now looking back on it, but we had no idea then. We just thought he had a new girlfriend or something — he was 26. We thought maybe he was getting old by baseball standards. But the reality was, this was the beginning of ALS.

Six hours after Pete was finally diagnosed on March, 13, 2012, our whole family was sitting around the kitchen table; the situation was traumatic, to put it mildly. It was then that Pete decided he was going to set the vision. He told us that he wasn’t going to feel sorry for myself. He told us it was an amazing opportunity to change the world. He said that we were going to spread awareness that will lead to funding. And he said he was going to get this disease in front of a philanthropist like Bill Gates.

Six hours after his diagnosis.

After we made peace with the news, we both thought about going back to medical school to help our son. Then we realized we didn’t have time — three-to-five years is the life expectancy doctors gave Pete. But we have been entrepreneurs all our lives and our three kids work in the business world. As a family, we decided to create Team Frate Train. We put together our skills and we realized we had a webmaster; we had an accountant; we had graphic artists; all sitting at the table with us within a couple of days. So, we built a website, we built a team Frate Train Facebook page. We had a Twitter handle. We had a gear store. Pete started a travel team page — buy a Frate Train Tee, go around the world, take a pic with it on and send it back to us. There’s got to be a thousand pictures on that site from all over the world.

Pete shared his insight on the site. He made the disease human, relatable. We hosted ALS awareness games; we met with members of Congress on Capitol Hill. We all worked vigorously for two-and-a-half years. And then the Ice Bucket Challenge changed everything in one six-week time frame.

The origin of the Ice Bucket Challenge began when Pete became friends with another young ALS patient, Pat Quinn. Pat started the ALS Ice Bucket Challenge in Westchester, N.Y., and once Pete got wind of the idea, he spread it to his following on the Team Frate Train Facebook page. Pete knew Steve Gleason from the New Orleans Saints, Kevin Swan in Florida, O.J. Brigance, and Kevin Turner. These are athletes, young guys with ALS who wanted to help. These guys made a very conscious decision to document their journeys so people actually saw the reality of it — their bodies failing their minds. Pete knew these athletes were the vehicle and the Ice Bucket Challenge helped illustrate the message.

So, he instructed us on July 31st, to get people to comment on every Ice Bucket Challenge video and post it on our Team Frate Train Facebook page. Share it. So, we started with our family and friends. Then three days into it it, one afternoon, there were six people with laptops (still in their pajamas), working, commenting, sharing. It was crazy. Our webmaster sent us a text the same day telling us traffic on our site had gone completely beyond our sphere.

Unfortunately, Pete can no longer speak, but he can still smile. And he lit up at one specific point during the ALS Ice Bucket Challenge more than ever before. Bill Gates’ video was especially important for Pete. Bill Gates did an unbelievable presentation in his Ice Bucket Challenge, and Bill Gates donated to ALS. Also, Gates is working very closely with Steve Gleason on enhancing the technology to aid ALS patients. Because that’s what these young guys are saying: Technology is the treatment for ALS right now until we get a medical cure. The way ALS patients communicate, the way they roam their household, is all done with technology. They use eye-tracking technology to type, and they have a speech device that can read text for them. This technology can be an ALS patient’s voice.

Without sports, Pete would not have had the drive and determination to make the impact he’s made on ALS. Sports made Pete the man that he is. He has innate leadership qualities; he has innate athletic abilities; it was his involvement in sports that propelled those skills to lead this effort.

When the ALS mountain was moved, it was sports that did it. What a dynamic culture it is. We have been told so many amazing stories of people who felt that they had a disease that wasn’t the buzzy disease — the one everyone jumps on to support. People weren’t talking about it. So many families tell us how their loved one wakes up and can’t wait to get on the computer and hear people say, “ALS.”

As parents, you aim to have productive, compassionate, happy adult children one day. And that’s what we’re most proud of about Pete. Whatever kindness Pete put out there to his friends as a great connector and friend has come back to us hundreds of times over. That’s the lesson to be learned from him really. One man has literally changed the course of history because he cares for others. It’s unlikely that any of the technology advancements being made will be able to help Pete at this stage of his disease. But he’s changing things for his friends. We’re very proud of Pete for doing that. That is his legacy.